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Actualización (Versión en Español): Launch of the European ADPKD Forum Report: Translating science into policy to improve ADPKD care

The European ADPKD Forum (EAF) is a multidisciplinary, international faculty of experts dedicated to improving the health and quality of life of people with autosomal dominant polycystic kidney disease (ADPKD).

The EAF Faculty comprises leading patient advocates together with practitioners and researchers from the fields of nephrology, hepatology and genetics.

European ADPKD Forum Faculty

On 29 January 2015, the EAF launched its first report, the EAF Report 29Jan2015-english. This report is based on the latest scientific knowledge about ADPKD and insights from leading experts and patient advocates. It also features results from recent surveys of patients. The report was launched in Brussels at a meeting attended by patients advocates, representatives of various health stakeholder organisations, EU officials and ADPKD experts.

• Explain ADPKD and raise awareness of the disease and its implications for patients, health services and economies in Europe - issues that are often under-recognised by many health stakeholders and policymakers.
• Recommend strategies to improve ADPKD care within the context of health policy development at the European and national levels.
• Encourage and facilitate collaboration between those individuals and groups involved in the management of people with ADPKD, including health policy-makers, healthcare providers, payers, patients, caregivers and industry.

The Report is endorsed by PKD International and EGAN, the Patient Network for Research and Health. It was developed in alignment with the Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference Report on ADPKD (Kidney International, in press). It is accompanied by the “Brussels Declaration on ADPKD”, which encaptulates the EAF recommendations and their rationale.

Versión en Inglés
Versión en Español (NUEVO)